Autism and ABA: The gulf between North America and Europe
Keenan, M., Dillenburger, K., Röttgers, H-R., Dounavi, K., Jónsdóttir, S. L., Moderato, P., ... Martin, N. (2015).
Autism and ABA: The gulf between North America and Europe. Review Journal of Autism and Developmental
Disorders, 2(2), 167-183. DOI: 10.1007/s40489-014-0045-2
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Review Journal of Autism and Developmental Disorders
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Download date:16. Jun. 2017
Running Head: Autism and ABA
Autism and ABA:
The gulf between North America and Europe
InpressReviewJournalofAutismandDevelopmentalDisorders(2014)
Mickey Keenan
School of Psychology
University of Ulster
N. Ireland
Karola Dillenburger
Centre for Behaviour Analysis
School of Education
Queen’s University, Belfast
N. Ireland
Hanns Rüdiger Röttgers
University of Applied Sciences
Münster
Germany
Katerina Dounavi
Centre for Behaviour Analysis
School of Education
Queen’s University, Belfast
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N. Ireland
Sigríður Lóa Jónsdóttir
State Diagnostic and Counselling Centre
Iceland
Paolo Moderato
Institute of Behaviour, Consumers, Communication
IULM University Milano,
Italy
Jacqueline J. A.M. Schenk
Department of Pedagogical & Educational Sciences
Erasmus University Rotterdam
Netherlands
Javier Virués-Ortega
School of Psychology
The University of Auckland
New Zealand
Lise Roll-Pettersson
Specialpedagogiska institutionen,
Stockholm University
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Sweden
Abstract
Autism Spectrum Disorder is diagnosed when an individual shows specific social
communication difficulties and repetitive behavior patterns. Prevalence estimations
have been increasing over the past few years with rates now at 1:68. Interventions that
are based on Applied Behavior Analysis are significantly related to best outcomes and
are widely considered ‘treatment as usual’ in North America. In Europe this is not the
case, instead a rather ill defined ‘eclectic’ approach is widely promoted. In this paper
we discuss some of the roots of this gulf between Europe and North America and
correct some of the misconceptions that prevail about Applied Behavior Analysis in
Europe.
Keywords: intervention; scientific method; parent training; evidence-based practice;
applied behaviour analysis; ABA
Corresponding author:
Prof. M. Keenan
School of Psychology
Ulster University
Coleraine
N. Ireland
BT52 1SA
Tel. +44 2870 124283
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Running Head: Autism and ABA
E’Mail [email protected]
The American Autism and Developmental Disabilities Monitoring Network reported
estimated prevalence rates for Autism Spectrum Disorder (ASD) to be 1 in 68 (Centers
for Disease Control, 2013). Similar figures are recorded in the UK and across Europe
(Hughes, 2011). These prevalence rates place huge demands on health care systems.
Economic costs associated with autism make it the most costly medical condition with
an annual total cost of $61 billion in the USA and at least £3.1 billion per year in the
UK, more than heart disease, stroke and cancer combined (Buescher, Cidav, Knapp, &
Mandell, 2014).
The common goal of autism interventions is to address quality of life issues by
improving skills that can remove barriers to learning and facilitate independence; best
practice utilises methods based in Applied Behavior Analysis (ABA) (Anagnostou,
Zwaigenbaum, Szatmari, 2014; Maurice, Green, & Fox, 2001). In fact, there is a highly
statistically significant relationship between ABA-based interventions and optimal
outcomes (Fein et al., 2013; Orinstein et al. 2014). ABA-based interventions use a
data-based decision making model of program delivery to ensure that interventions are
holistic and person-centered; this means that the choice of intervention depends on the
behaviors to be established and on the progress attained at any point in time (Maurice,
Green, & Luce, 1996). Children who are in an intensive early ABA-based program
typically receive at least 25 hours per week (Myers & Johnson, 2007; National
Research Council, 2001; New York State Department of Health, 1999).
The focus of this paper is to draw attention to the kinds of issues that have influenced
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Governmental policy support for ABA-based interventions in the USA and Canada and
to examine the obstacles for the uptake of ABA in several European countries.
Gulf between Europe and North America
In the USA, and based on 30 years of research at the time, the Surgeon General (1999)
recommended ABA as basis of intervention. Since then, ABA-based interventions
have been considered as medically and educationally necessary and are considered
‘treatment as usual’, funded through government or health care systems in the vast
majority of States (38 States at the moment), federal bodies, such as the Office for
Personnel Management and Medicare, and many multinational companies, such as
JPMorgan Chase & Co., Microsoft, Apple, Goldman Sachs, Intel, etc. (Autism
Speaks, 2014). Board Certified Behavior Analysts (BCBA; www.bacb.com) are the
professionals who supervise these programs (frequently within licensure laws).
… ABA is not a stagnant, single continuum of prescribed methods but rather
emphasizes the use of methods that change behavior in systematic and
measurable ways with an emphasis on analysis, replication, social importance,
and accountability. ABA includes a large number of conceptually consistent
techniques that can be used in various combinations across many different
contexts whilst remaining abreast of developments in biology, medicine, and
neuroscience (e.g., dietary requirements). (Anderson & Romancyzk, 1999,
p.167)
Agreements to introduce laws that mandate the health care system to cover autism
interventions based on ABA in each of the 38 States in the USA have arisen from
intense deliberations about the quality of the research evidence (Unumb, 2013;
Hagopian & Hardesty, 2014). This evidence is substantial and includes results from
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1. over 2000 replicated single system design studies
2. Randomised controlled trials (RCT)
3. Meta analyses
4. Sequential meta analyses
5. Systematic reviews
6. Neuroscience (plasticity of brain)
7. Social validity measures
8. Cost – Benefit analyses (see Larsson, 2013 for extensive list of references)
Similarly in Canada, ABA is viewed as providing the foundation for effective
treatment and ABA-based services are available, although the extent of coverage varies
across Provinces (Autism Society Canada, 2010; Autism Now, 2014).
In contrast to North America, ABA-based interventions are not endorsed by
Governments across Europe. A paper in the Autism Europe newsletter serves as a good
example of how the evidence for ABA-based interventions is ignored in Europe
(Howlin, 2013). While Howlin (2013) refers briefly to Lovaas (1987), who is credited
with the first large scale study on using ABA-based interventions for autism, her
discussion is devoid of any reference to the extensive body of evidence supportive of
the application of behavior analysis.
This omission is all the more remarkable when you consider that Howlin’s own
research (Howlin, Magiati, & Charman, 2009) showed that on average children who
received ABA-based interventions did much better than those who received eclectic
‘treatment as usual’. While Howlin et al. noted that there were considerable benefits at
the group level, they focused much more intensely on the fact that, on an individual
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level, not all children benefited as much. In other words, these researchers focused on
the relatively short ‘low impact tail’ of the distribution curve rather than on the large
average or the significant ‘high impact tail’ (cf., Dillenburger, 2014). These findings
are quoted frequently in Europe as an argument to withhold support for ABA-based
interventions (Dillenburger, Keenan, Doherty, Byrne, & Gallagher, 2010).
In a European context where training in behavior analysis to international standards is
not commonly available, it is not surprising to find that ideological assumptions can
interfere with an objective appraisal of empirical data (Fazzio, 2014; Keenan,
Dillenburger, Röttgers, Moderato, 2010; see also video testimonials by professionals
from Iceland, Italy, Sweden, and the Netherlands at STAMPPP, 2014). In a recent 40year follow-up study of children diagnosed with autism in the 1970s (Howlin, Savage,
Moss, Tempier, & Rutter, 2014), Howlin’s personal negative opinion about ABA was
again in sharp contrast to her own findings that showed extremely poor long-term
outcomes of eclectic school intervention, i.e., 75% of the adults (average age 44 years)
had plateaued at their 3-year-old levels while 25% of these adults could not even be
assessed due to lack of communication skills and challenging behaviors. Howlin et al.
(2014) concluded that, “[a]lthough many attended [eclectic] specialist autism schools
as children… none had access to the intensive, early behavioral programs, that are
available today and which are claimed, by some, to have a significant impact on IQ and
long-term outcome” (p. 56).
This indirect endorsement of ABA by Howlin et al is misleading because in fact, only
one third (32.3%) of young children with ASD (aged <6 years) in Europe receive
behavioral intervention of any type, ranging from 8.6% in the Czech Republic to
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80.6% in Romania (Salomone, Beranová, Bonnet-Brilhault, Lauritsen, Budisteanu,
Buitelaar, et al., (under review). Salomone et al. found that the average number of
hours per week was 8.69 (range 0.64-23; SD 9.80). However, given that these data are
based on an online survey that was completed by-and-large by well-educated parents (a
common proxy for Social Economic Status; SES), it is likely the behavioral
interventions are much scarcer for most children with autism in Europe, especially
those living in deprived areas. When effective behavioral interentions are not
supported by established academics, and consequently not implemented in local health
and education systems, the real figures show considerable inequalities related to
parental education and social economic status.
Cultural issues
Apart from academic confusion (Baird, 2014) and ideologically motivated omissions
(Howlin, 2013) or distortions (Howlin, Magiati, & Charman, 2009; Howlin et al.,
2014), there are other issues that impact directly on efforts to disseminate accurate
information on the effectiveness of developing interventions that stem from ABA. One
of these issues is embedded in difficulties arising from the transmission of research
findings from one culture to another (Dillenburger, McKerr, & Jordan, 2014). It is
customary in Europe, for example, not to involve behavior analysts in the writing
teams of Government reports regarding autism interventions (Keenan, 2014). A good
example is the Linea Guida 21, a guideline on effective treatments for autism recently
published by Italian Istituto Superiore di Sanità (ISS, 2011), (a research branch of the
Italian Ministry of Health). This guideline asserts that behavioral interventions are
most effective in autism treatment. However, because no behavior analyst, nor
academic or professional trained in ABA, was on the scientific board that evaluated the
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research (Moderato, 2012) the guideline report contained serious examples of
confusion between science, procedures, models and protocols for intervention (see
below).
Misrepresentations of ABA abound not only in government reports but also in the
media and social media (Baron-Cohen, 2014; The Skeptical Advisor, 2014) and even
more worryingly in some peer-reviewed journal articles (Cassidy, McConkey,
Truesdale-Kennedy, & Slevin, 2007). ABA has been caricatured beyond recognition
(Jordan, 2001), mocked (Kaufman, 2013), branded controversial (Lambert, 2104;
Scott, 2014), related to post-traumatic stress disorder (PTSD; Research Autism, 2014)
and attacked for promoting a ‘normalization agenda’ (Lambert, 2014; Milton, 2014).
Maurice (1999) captured these absurdities and controversial misrepresentations as
follows:
Dozens of pseudo-scientific books and articles out there describe it [i.e.,
ABA] as child abuse, a squelching of the spirit, a crushing of the soul.
Treating the symptoms and not the "root cause," whatever that might be; a
denial of the self, cruel, manipulative, dehumanizing, punishing, controlling;
etc. etc.
Moreover, even when people do not attack behavior analysis, they make
glaringly ignorant statements about it, like "Oh yes, that's where they do
discrete trials for forty hours a week." Or, "behavior management is for really
low functioning kids. (p. 3)
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To highlight the significance of common caricatures of ABA in autism intervention,
Figure 1 offers an accurate, albeit bare bones summary of how the scientific method
guides decision making in an ABA program.
Figure 1: Five basic steps in using the Scientific Method in ABA (adapted from Reese,
Howard, & Reese 1979, p. 34).
Step 1: Select behavior to be analysed
A decision is made about which behaviors should be analysed, i.e., targeted for change.
For younger children with autism, this decision involves the family and professionals
working as a team to determine priorities and goals to be achieved. Older children and
adults are involved themselves in decision making about which skills would enhance
their quality of life, e.g., the development of social or employment skills.
Step 2: Measure the behavior
As with any science, decisions are made about how best way to measure the behavior
which defines the goals of an intervention, e.g., is it more important to engage in a
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behavior more often (and thus measure frequency) or to engage in a behavior for
longer periods of time (and thus measure duration); or is it important to engage in the
behavior quicker (and thus measure interresponse time or latency) or to engage in a
behavior more ‘smoothly’ (and thus measure fluency). Measurement is essential for
monitoring progress and for tailoring an intervention to the needs of an individual.
Training in the analysis of behavior provides skills in the operational definition of
psychological terms. This skill set provides measurement strategies that bypass
misleading issues arising from the use of summary labels and explanatory fictions
(Chiesa, 1994; Cooper, Heron, & Heward, 2013; Moore, 2008).
Step 3: Select treatment strategies
Progress of course, depends on which intervention you use. This in turn depends on the
nature of the goals specific to each individual. Interventions in ABA are based on
existing principles of behavior that have been uncovered by the natural science of
behavior analysis; in other words, they are based on the findings of how behavior
works. Behavior is defined holistically as the interaction between the biological
organism and the environment. It is understood that this interaction involves a
continuous flow of adaptations and therefore interventions have to remain flexibly
attuned to changes as they occur. The intervention strategy, then, depends on
individual circumstances and it changes dynamically with behavioral change and
progress.
That said, there have been some issues about particular procedures, especially if they
included the use of aversives. Lorna Wing (1966), for example, recommended a
‘smack, a loud firm ‘no’ or putting the child out of the room’ (p. 272) for children with
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autism. Schopler et al. (1980), who devised the commercial package called TEACCH
(Treatment and Education of Autistic and related Communication Handicapped
Children) described the use of ‘aversive and painful procedures’ such as meal
deprivation (p.121), ‘slaps or spanks on the bottom’ (p.121), and ‘electric shock,
unpleasant tasting or smelling substances’ (p.122) as methods that could be used if
other methods do not work. For some unknown reason, though, it has been Lovaas who
was much more heavily criticized for using these methods than either Wing or
Schopler (Webster, 2011).
The discussion about the use of aversives should be viewed in historical perspective. In
the UK, the ‘cane’ was used to inflict corporal punishment in mainstream schools for
all children, until it was finally outlawed in 1987! In private schools corporal
punishment was not banned until as recently as 1999 in England and Wales, 2000 in
Scotland, and 2003 in Northern Ireland. Physical punishment of children by their own
parents is still not illegal in many parts of the world. This is by no means a justification
for the use of aversives, on the contrary (Dillenburger & Keenan, 1994; Goupillot &
Keenan, 1995), but it helps to put into context the allegations that the use of aversives
was a feature peculiar to behavioral interventions in the 1960s. Sadly, corporal
punishment was generally part of life then. Corporal punishment and the widespread
use of aversives are no more advocated in ABA than they are accepted anywhere else
in modern day society (Sidman, 2000; see also ABAI, 2014, for a position statement on
Restraint and Seclusion).
Step 4: Implement the strategies
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This involves the application of the chosen intervention strategy, and data collection to
monitor whether the goal is being reached. Data collection shows, for example,
whether progress is being made towards the goal, even if this progress is slower than
anticipated. In ABA, data collection takes place continuously throughout the
intervention, not merely at the end.
Step 5: Evaluate the outcomes
This is integral to the person/child-centered focus of ABA in that it demands
adjustments to be made depending on the progress of the individual when using the
selected intervention. At its most basic, if the intervention is not working, then it is
adjusted until the targeted change is achieved, i.e., the barriers to quality of life are
removed.
Across all of these steps there is nothing that is cruel or controversial about applying
the scientific method. Even parents who are not specifically trained in ABA find the
steps coherent and ‘common sense’ (ABA4all, 2014). At its most basic level, behavior
analysis simply makes explicit the principles of behavior that operate implicitly in
everyday life (Keenan & Dillenburger, 2014). The emphasis here is the word
‘analysis’: “Such an approach entails far more than changing behavior. It entails
understanding behavior and the complexity of the interactions between individuals and
their environment, particularly their social environment.” (Walsh, 1997, p. 101). So
where is the problem? How come the outrageous caricatures persist and impede the
uptake of an effective science?
Communicating the practices of a natural science
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One of the difficulties with understanding the ‘real’ ABA is the language of the science
itself. There are a couple of issues at work here. Figure 2 illustrates one aspect of the
problem. The left-hand panel shows a surgeon operating on a child while at the same
time a group of medical students are watching intently. Imagine that the surgeon is
providing a running technical commentary on every incision and every decision he
makes regarding his manipulation of the child’s internal organs. He does so to ensure
that his students will be able to replicate the operation with the same degree of skill he
is showing them.
Figure 2. Different perspectives of a professional at work.
Left panel: A surgeon is giving a running commentary on his operation to
medical students.
Right panel: The same commentary is given to parents of the child undergoing
the operation.
Now imagine we could rewind the clock and repeat the operation. This time though,
the audience is changed (right-hand panel). This time the parents of the child (lay
person) watch the surgeon. It is easy to see why the parents and others not trained in a
natural science might view the words of the surgeon as overtly technical or even cold
and uncaring. At issue here is not the skill of the surgeon, but the level of
understanding in the audience. This is an unfortunate problem because the surgeon is
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not a cold-hearted individual and the science that guides the operation is acutely
concerned with human welfare and wellbeing1. The problem is one of how to share
sophisticated knowledge and skills with lay people who have not received training in
the science.
The same is true for ABA. However, training in the science of ABA to international
standards is not available in most European countries (BACB, 2014; Chiesa, 2001;
STAMPPP, 2014). For instance, Dillenburger, Röttgers, Dounavi, et al. (2014) noted
that professionals who are typically involved in autism diagnosis and treatment (i.e.,
paediatricians, psychiatrists, social workers, speech and language pathologists,
occupational therapists, teachers, as well as clinical and educational psychologists)
generally receive very little or no training in autism or ABA during their qualifying
training.
It is conceivable, therefore, that professionals who are untrained in a natural science of
behavior may come to conclude that they are watching the practices of a cold-hearted
doctor and do not appreciate the precision and sophistication of his skills . Yet, without
the skills of the doctor or scientist, and subsequently the skills of next generation of
students of the science, the child’s prognosis would be very poor; similarly, if the
intervention were to be conducted by someone not appropriately skilled, it would most
likely not be effective.
1This example is not meant to imply that a medical model is being promoted. It is
merely an example of the problems caused when technical terms from a science are
misunderstood by those not trained in that science.
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To some extent, misrepresentation of ABA is to be expected when training is not
available. However, there is another more pernicious and subtle way to undermine the
potential support by governments for training in ABA in Europe. Keenan,
Dillenburger, Moderato and Röttgers (2010) drew attention to the damaging effects of
the privatisation of science by behavior analysts in a context where governments and
parents cannot discriminate between commercial products and the science that lead to
the development of these commercial products. For example, Early Start Denver
Model (ESDM), which is now popular in Italy, is based on behavior analytic
principles. Behavior analysis is a science, ABA is an applied science or technology,
ESDM is one of the many possible models that apply the principles (Moderato &
Copelli, 2010 a,b). The same is true for Positive Behavior Support (PBS) and the
Picture Exchange Communication System (PECS), both of which are widely supported
in the UK and elsewhere in Europe. It would appear at times that the commercial
interests in the promotion of a ‘product’ come into conflict with efforts to ensure that
ABA is exalted as the foundation of the product.
The state of the science in Europe
UK & Ireland
The historical legacy of ‘behavior modification’ without functional assessment or
functional analysis (i.e., the rush to implement behavior change procedures without
appropriate analysis of the function of behavior, Walsh, 1997) has resulted in a
blinkered view of the true nature of behavior analysis (Keenan, 2004; NAS, 2014;
NICE, 2013), including confusion over how the term ‘behavior’ is viewed by behavior
analysts (see comments to Lambert, 2014). A good example comes from a major
charitable organization, Research Autism, that informs the National Health Service on
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autism interventions:
Because there are many different interventions, programmes and techniques
used to help individuals with autism which incorporate the principles of
applied behaviour analysis it is not possible to provide a ranking for applied
behavioural analysis as a whole. (Research Autism, 2014)
The suggestion here that ABA is simply a collection of procedures/techniques is a
theme that is repeated across Europe and has lead to the marginalization of a whole
science (Odom, Hume, Boyd, & Stabel, 2012). In marked contrast to the conclusions
of Research Autism, Hagopian and Hardesty (2014) provide a comprehensive list of
other organisations that were able to make recommendations about ABA. In Ireland,
North and South, the predominant view also is that ‘ABA is simply one of a number of
techniques’ provided within an eclectic model of service provision (Keenan, 2014;
McCormack, 2014). To complicate matters, the list of techniques includes a serious
category mistake (see below) such that ABA and PECS, for example, are each
considered techniques:
As it stands, the ABA experts are uniformly of the opinion that what the
government provides under the eclectic model is not ABA in any sense of the
word. What the department of education is doing is the equivalent of ignoring
the advice of heart surgeons on heart surgery and instead taking advice from
GPs and dentists. (Irish Election, 2014)
Germany
In Germany, Applied Behavior Analysis is neither officially recognized nor supported.
The responsibility for the care of persons with autism lies with both the health and the
social care sectors. Diagnosis of ASD and of comorbid disorders is the responsibility
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of the health care system, but due to a court decision in 2009, ASD is classified as a
static, ‘lifelong’ condition that does not respond to intervention and therefore does not
legally qualify for treatment. As a result, German healthcare (i.e., health insurance) are
not obliged to cover autism treatment. In reality, some healthcare funding is available
for individual and group programs for adolescents and adults with high-functioning
ASD and Asperger’s Syndrome. Intensive programs for children and persons with lowfunctioning ASD are not funded, despite the fact that professional medical guidelines
recommend behavioral interventions as the only evidence-based interventions2.
Where they are available, autism interventions in the health care sector are delivered or
supervised by medical or psychological professionals, who have recognised
qualification in behavior therapy. The term “autism specific behavior therapy” (AVT)
has been established for the methods used with individuals with autism. Autism
specific behavior therapy is not the same as ABA and does not necessarily meet the
quality standards of the Behavior Analyst Certification Board.
Early or intensive ASD interventions are the responsibility of the social and disability
care system. This system is organized on a local level without federal or Länder/State
standards. Decisions regarding intervention method, intensity, and staff qualification
are made by public servants with administrative qualifications and/or by social workers
most of whom have little or no training or experience in the field of ASD.
1.
2 Dt. Ges.f. Kinder- und Jugendpsychiatrie und Psychotherapie (Eds.):
Leitlinien zur Diagnostik und Therapie von psychischen Störungen im
Säuglings-, Kindes- und Jugendalter. Tief greifende Entwicklungsstörungen (F
84) in: Deutscher Ärzte-Verlag, 3. überarbeitete Auflage 2007, S. 225 - 237
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While there are a small number of autism-specific institutions who deliver behavioral
programs, the majority of these centers prefer an “eclectic” approach, including
nonspecific, psychodynamic, and/or complementary and alternative medical
interventions that are not evidence-based. The leading parents’ advocacy group
Autismus Deutschland strongly opposes the focus on evidence-based interventions, in
fact, they view them as ‘restriction’. However recently, due to extensive lobbying from
experts as well as parent groups, there are some signs of development.
Recommendations and guidelines are about to be published in some German
Länder/States by the social and disability services that are based on evidence in favor
of behavior interventions3.
There are no courses in German universities that teach full ABA curricula because a
degree in ABA would not legally be considered as a healthcare profession. In addition,
curricula in most psychology and medical courses do not prepare students for autism
specific interventions (Dillenburger et al., 2014).
The University of Applied Sciences in Münster is the only German university that
offers undergraduate and postgraduate courses in “autism specific behavior therapy” in
cooperation and with the support of international partners and the leading association
of behavioral psychotherapists (Deutsche Gesellschaft für Verhaltenstherapie; DGVT)
offers a (voluntary) postgraduate staff qualification in “autism therapy” with a strong
behavioral focus.
3 Landschaftsverband Rheinland und Westfalen-Lippe (federation of city councils in
the state of Northrhine-Westphalia): Recommendations for interventions for children
and adolescents paid for by the local social care authorities, due late 2014.
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There are a few local initiatives in Germany, such as the Association for Behaviour
Analysis Deutschland (ABA-D), that are either supported by ABA professionals
trained abroad or by psychological or psychiatric staff with extensive experience in the
field. In some places, early behavioral interventions are delivered to a limited number
of families under a variety of different supervision and funding arrangements,
including not-for-profit as well as private enterprises.
Statutory education in Germany is governed by Länder/States and therefore the school
situation for children with autism varies considerably. For the most part, educational
staff and teachers tend to reject behavioral interventions, whereas special needs
education staff is more open.
In sum, Germany is still considered a ‘developing country’ in terms of autism therapy.
Progress is slow and the potential of the majority of persons with ASD remain
untapped and their quality of life and chances for independent living remain
unnecessarily limited.
Greece
In Greece, the first BCBA offering ABA-based services to families of children with
ASD appeared on the BACB registry in 2009, and the panorama has not changed a lot
since then. Instead, an internet search reveals that there is an abundance of
professionals who are not BCBAs offering ABA as one option within an eclectic
model. This lack of quality in the behavior analytic services feeds the debate about
whether ABA-based treatment is humane, can achieve generalization, or takes into
account different individual needs. This situation represents a major obstacle in helping
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children with ASD reach their full potential because it misleads parents, naïve
professionals, and the health system overall.
The difficulties experienced by the Greek economy place a further burden on families,
who up to 2011 received a maximum of 527€ per month by the state (Joint Ministerial
Decision Γ4/Φ.12/οικ.1930/1982; Joint Ministerial Decision Π3α/Φ.18/Γ.Π.οικ.
63731/2008) but in 2013 their benefits were limited and only applicable only to
individuals diagnosed with at least 80% of impairment (Joint Ministerial Decision
Π3α/Φ.18/Γ.Π.οικ. 63731/2013). These changes in legislation together with increased
unemployment and decreased salaries have undoubtedly limited access to effective
treatment. Additionally, given that legislation in Greece does not accommodate ASD
separately, but instead describes the necessary education and treatment for all children
with special needs, Applied Behavior Analysis is not even mentioned in any official
documents. Instead, traditional eclectic interventions delivered by psychiatrists,
psychologists, speech and language therapists, special teachers and occupational
therapists are often prescribed and partly funded by the public health system in
educational or home settings (Ministry of Interior, Public Administration and
Decentralization. General Secretariat of Public Administration and Electronic
Governance. General Directorate of Administrative Organization and Procedures,
2007). Official documents repeatedly mention “early intervention” and “inclusion” as
goals but these are to be achieved by state teachers who do not have training in
Behavior Analysis (Law 3699/2008).
Notwithstanding this devastating picture, in 2009 the conference of the European
Association for Behaviour Analysis was held in Greece, and thanks to the efforts of a
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small number of behavior analysts, both academics and clinicians, there has been an
increase in the number of students learning about ABA at undergraduate and
postgraduate level through Greek textbooks (e.g., the first comprehensive textbook on
Behavior Analysis in the Greek language was published by Mellon in 2005). Since
then, an increase has been observed in the number of professionals who receive
supervision by a BCBA or BCBA-D, and an increase in the number of families and
professionals who can now access accurate information on the science (e.g.,
Dounavi,2013). Although there is a long and difficult journey ahead, there is hope that
knowledge about the applications of ABA will reach the public eventually.
Iceland
In Iceland, ABA based intervention for pre-schoolers with ASD started as a research
project in 1995, and in 2000 a decision was taken at the State Diagnostic and
Counselling Centre (SDCC), an institution that serves the whole country, to inform
parents of newly diagnosed young children about this option in addition to the
prevailing eclectic approach. Today, more than half of these parents choose an ABA
program and attend courses and workshops provided by the SDCC. The legislature has
provided young children with ASD, as well as other children with special needs, the
rights to services at the pre-school level under the guidance of specialists (The PreSchool Act, no. 90/2008). Provisions are made for special education for a specific
number of hours per week depending on the child´s needs and condition. There are,
however, no official guidelines or recommendations available regarding teaching
methods, giving those who are responsible for providing the services in the schools the
freedom to follow their own preferences.
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Running Head: Autism and ABA
The uptake of ABA has not been painless and is still met with scepticism by some
service providers, who refuse to accommodate it due to ideological reasons, and the
well known comparison with dog training is still heard. Misinformation about ABA is
not surprising when considering the education and training of teachers and other
professionals who are directly involved with teaching children with autism. A brief
survey conducted in 2013 of the content of their education at the University of Iceland,
indicated that they have not been provided with a theoretical background in behavior
analysis, nor training in the specialized and evidence based methods that are needed in
order to teach children with special needs in an effective way (Sigurdardóttir,
Pétursdóttir, Jónsdóttir, & Magnússon, 2013).
There are only five BCBA´s in Iceland, and three of them supervise programs for
children with ASD part of their time. In addition, there are a handful of supervisors
with some education and extensive experience in behavior analysis, but without
certification. Although the services have suffered from too few qualified supervisors
who can meet increasing requests from parents for an ABA based program, there is a
reason for some optimism. A master’s program has recently been established at
Reykjavik University that offers the courses required for a BCBA certification. Many
school principals, both at the pre- and primary school level, have supported the uptake
of ABA for students with ASD in their schools, even though most of those who
provide direct services (teachers and trainers) are still not receiving adequate training
and supervision. However, one school is collaborating with credentialed ABA
consultants from USA. Another example is a pre-school in Reykjavík that is now
aiming at being recognized as specialized in ABA based intervention, where plans are
being made to collaborate with the universities and experts in the field, and to secure
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Running Head: Autism and ABA
supervision from BCBA´s. This project holds the potential to become a training center
for those who want to pursue certification in behavior analysis, as well serving as a
model for other schools.
Italy
In Italy the welfare system provides supports and services free of charge to children
with disabilities and their families. This is a general statement, the way of applying it
depends on the regulations of each regions. Due to the lack of an Autism Reference
Centre, like those that exist for other conditions (e.g., oncology) the waiting list to have
a diagnosis from a child psychiatry department is long, 6 months to 1 year or more.
Following a diagnosis of ASD, the child is generally assigned to an eclectic treatment:
1 or 2 session a week with a physical/psychomotor therapist and a speech and language
therapist. With very few exceptions, a board certified behavior analyst, or someone
with equivalent qualifications, is not available in the public health service. This means
that the parents, once they realize (via some unofficial or informal way) that ABAbased treatment is what they need and what they want for their child, they must find
and recruit a private ABA consultant. The cost of doing this is partially (20-40%)
reimbursed in some regions, like Veneto and Puglia, up to €5200 in Tuscany,
according to the different regional health systems. The criteria for acknowledging who
is to deliver ABA-based interventions is very loose and confused.
As an alternative to obtaining behaviorally based interventions, the family can take the
child to a habilitation center or private clinic, very few of which deliver true ABAbased treatments. The interventions are carried out in the center, and should follow the
Linea Guida 21 mentioned above. Unfortunately, the Italian Parliament has not yet
24
Running Head: Autism and ABA
made a general law to regulate the field and force every single ceinter and department
to follow the guideline and provide only interventions based on science and best
practice. The lack of an overall law allows methods such as ‘facilitated
communication’ to survive in some parts of our country. In Lombardy, in 2011
IESCUM and FOBAP-Anfas (an historical association for disabled people – AAIDD
like), started a pilot project, funded by the regional government, to provide ABA
interventions, for kids from age 2 years to age 16 years: 4 two-hour sessions plus two
hours parent/teacher training for children 2 to 7; 2 two-hour sessions plus two hours
parent/teacher training for kids 7 to 12, and so on. The results are very encouraging in
terms of effectiveness with a reasonably limited use of human resources. Sustainability
of the interventions is (will be) indeed one of the main problems to face once people
ask for early or intensive ASD interventions4.
In parallel with this pilot project, children are included in regular preschool class,
according to Italian law for inclusion, with a special support teacher to work with the
child. This is a great opportunity for development for the child, especially if the special
support teacher is trained in the principles of behavior analysis and the whole school
collaborates with the ABA consultant. The acceptance of ABA within mainstream
pedagogy, however, is very low; the situation is somewhat better, with many caveats,
within special education pedagogy. One of the reasons for this state of affairs is the
negative, though not unexpected, side effect of the publication of Linea Guida 21.
Due to the increased demand of EIBI and the lack of available certified ABA
consultants (there are only about 40), some private agencies organize short courses,
4SometimespackagedasEarly Intensive Behavioral Intervention (EIBI)
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Running Head: Autism and ABA
with the promise of training people as ABA-VB consultants. This is, of course, false
advertising. What is even worse, though, is that some state and private universities
advertise Master programs in ABA where the science of behavior analysis has no
home, and EIBI disappears in an ocean of eclectic interventions.
Netherlands
On average, children in the Netherlands are diagnosed with ASD from the age of five
years (Nederlandse Vereniging voor Autisme, 2008; Peters-Scheffer, Verschuur,
Huskens, & Didden, 2014). As a consequence, these children receive treatment much
later than is recommended (Warren et al., 2011). Some children with ASD enrol in
special classes (about 23% in less intensive special education and 35% in intensive
special education), while others (about 39%) attend a class where there are other
children with developmental disabilities such as Down syndrome, learning disabilities
and/or an intellectual disability, and/or behavioral challenges (Nederlandse Vereniging
voor Autisme, 2008). Due to recent changes in educational policy in the Netherlands
(Rijksoverheid Nederland, 2013; Dienst Uitvoering Onderwijs, 2010), children with
ASD who have an average or higher intellectual and linguistic ability are increasingly
attending regular education. It is uncertain to what extent school placement scores
predict later social and economic functioning for children with ASD, however, there is
some evidence that school attendance and increased social interaction with peers and
adult educators provides them with more opportunities to prepare for the future
(Eikeseth, 2009; Matson & Smith, 2008; Peters-Scheffer, Didden, Korzilius, &
Sturmey, 2011; Reichow & Wolery, 2009; Smith, Groen, & Wynn, 2000). Currently,
this outlook is rather bleak in terms of employment, housing, and relationships
(Howlin, et al., 2014; Parsons et al, 2013).
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Running Head: Autism and ABA
Dutch teachers are increasingly confronted with a three-fold set of demands: (1)
increasing number of pupils in their class (currently, on average 30); (2) increasing
heterogeneity or diversity of the pupil population, behavioral and/or intellectual
challenges; (3) increasing responsibility of educational and care provisions for all
pupils in their class due to Passed Onderwijs/Inclusive Education, which is currently
being implemented (Dienst Uitvoering Onderwijs, 2010). In other words, teachers are
expected to cater for the educational and care needs of all pupils in their class.
However, teachers are only sparsely equipped with evidence-based tools to meet these
expectations and to provide adequate and sufficient support for pupils with special
educational needs, including those with ASD (Neidt & Schenk, 2012). In addition,
other barriers to implementation of evidence-based practice informed by ABA include
incompletely developed interventions that have limited empirical evidence to their
effectiveness and implementation of ABA-based interventions by professionals who
have not received accredited ABA training; after all, to date, in the Netherlands no
higher education and/or training is available for those interested in ABA. To
complicate matters, Dutch parents of children with ASD are mainly informed about
psycho-education and pharmacological treatment options following diagnosis (Neidt &
Schenk, 2012; Schothorst et al., 2009), receive limited information regarding evidencebased interventions in other countries and continents (Peters-Scheffer, 2013). To
illustrate, a recent Dutch guide for the multi-disciplinary diagnosis and treatment of
adults with ASD (Schothorst et al., 2009) claimed that there is no evidence that
outcomes for people with ASD in the long term are significantly better following
training programs during childhood (Kan et al., 2013).
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Running Head: Autism and ABA
Since few children in the Netherlands are engaged in EIBI programs, it will take many
years before professional educators and parents are properly informed about ABAbased intervention alternatives. The knock-on effect, of course, is that given the
shortage of appropriately educated and trained professionals, it will also take a long
time before large-scale applied research within school settings can demonstrate that
ABA-based interventions are effective, regardless of whether these are implemented at
preschool age or before; as long as implementation is done competently and
completely.
Spain
The group initiated by R. Bayés gave rise to a first generation of behavior analysts in
Spain that is still active today in academia (Bayes, 2003). During the 1970s, they
authored the first behavior-analytic studies to be conducted in the country (e.g., Bayes,
1972) and promoted Spanish editions of some behavioral classics (e.g., Skinner,
1952/1977, 1974/1977). Interestingly, autism services developed somewhat
independently from the university setting, where the experimental analysis of behavior
and clinical applications for adults and typical children have received more attention
(e.g., Ardila, 1998; Frojan-Parga, 1998; Luciano, 1996; Pellón & Blackman, 1987;
Vallejo & Ruíz, 2000; see also Cruz, 1984). Applied research with children with
autism developed significantly later and still today is clearly underrepresented – one of
few active research team is led by Dr. Luis Antonio Perez-Gonzalez at the Universidad
de Oviedo.
The first applied program for children with ASD offering behavioral services was the
Fundación Planeta Imaginario, established in Barcelona under the influence of the
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Running Head: Autism and ABA
Lovaas replication study. The program continues to be one of the leading ABA
services in the country. Currently, there are some ten applied programs and a similar
number of behavior analysts working as private consultants. A number of these
professionals have completed ABA Spain’s BACB-approved sequence (est. 2007) and
offer supervised fieldwork opportunities as part of ABA Spain’s approved practicum
(ABA Spain, 2014). The sequence has helped to disseminate BACB credentials, which
continue to gain momentum. Seven of the nine BCBAs registered in Spain have
undergone this sequence and a number of international students have also become
board-certified. The sequence is positioned within the top-ten online programs with a
pass rate over 70% in 2013. ABA Spain has also been critical in facilitating (a) the
translation of reference materials into Spanish (e.g., Miltenberger, 2013), (b) the
translation of BACB exams into Spanish, (c) the recognition of the BACB credentials
by the Spanish Colegio de Psicólogos, and (d) the development of a consortium of
applied programs offering practicum placements in Spain and the United States
(Virues-Ortega, Shook, Arntzen, Martin, Rodríguez García, & Rebollar Bernardo,
2009).
Yet, in spite of these promising signs, the situation for families of children with autism
is somewhat disheartening. Behavior analysts may assume less than 1% of the 7000
new cases of autism diagnosed every year in Spain.5 Moreover, ABA services are not
covered by the health or education administrations. While in a few documented
exceptions a court has mandated that a particular client “should receive intensive
behavioural intervention,” services are almost in every case paid by the families
5Estimation based on Center for Disease Control prevalence rates interpolated to the Spanish child
population for 2010; sources: CDC and INE.
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Running Head: Autism and ABA
privately (personal communication with J. J. Carnerero, clinical director Centro AlMudarïs, October 16, 2014). A few creative alternatives have been tried in recent
years. For example, the Escuelita de Ilusiones school in the Canary Islands
(fundailusiones.es) has transitioned from a non-for-profit project into an official special
education school. The school is government-funded but yet run privately.
In sum, greater presence in academia and greater advocacy in the public arena continue
to be important challenges in the agenda of behavior analysts in Spain.
Sweden
In Sweden, the welfare system provides supports and services free of charge on a needs
basis to children with disabilities and their families. Following a diagnosis of ASD the
child and parents are assigned to a multi-professional team which may consist of a
psychologist, special educator, speech language therapist, social worker, occupational
therapist and/or physical therapist any of whom may or may not also be a board
certified behavior analyst or have equivalent qualifications. In parallel with this, the
preschool in which the child is enrolled obtains central funding from the local
education authority to employ a para-professional (trainer) to work with the child (see
Eikeseth et al., 2012).
In regard to obtaining behaviorally based interventions (focused or comprehensive),
the family, child and trainer travel to the habilitation ceinter on a regular basis to obtain
supervision, review goals, model and role-play interventions. The interventions,
however, are carried out in the preschools and home, and it is extremely rare that
habilitation specialists are actually able to make onsite treatment fidelity visits. It is
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Running Head: Autism and ABA
within this sphere between habilitation and preschool that the complex mechanisms
within a dual service system come into play. For example, the National Health Care
Law (Hälso och sjukvårdslagen, 1982: 763) highlights the importance of personnel
within the health care system (e.g., habilitation) providing interventions based on
science and best practice. The Swedish habilitation administrators recommend early (as
soon as ASD is identified), comprehensive and intensive, behavioral interventions
(Bromark, Granat et al, 2012). However, while evidence and best practice are
mentioned in the Swedish Education Act (Skollagen, 2010:800) there is no definition
of these terms and consequences are not provided for preschools or schools for not
providing evidence-based interventions. Parents not obtaining evidenced-based
interventions cannot pursue disputes with educational authorities through court
adjudication and neither formal nor informal mediation is mentioned by the School
Inspection or the School Board of Appeal as an alternative to adjudication. Lack of
guidelines might also explain in part how methods such as ‘facilitated communication’
surface in some parts of Sweden (see Dagens Nyheter, 2014).
There are also philosophical perspectives engrained in the Swedish pedagogical
discourse that further distance the acceptance of ABA from mainstream pedagogy. For
example, in an article in Pedagogiska Magasinet (Englund & Engstrand, 2011), a
teacher union magazine with approximately 200, 000 subscribers, there was an
illustration depicting children as puppets, helplessly controlled by a behavior modifier.
This illustration won the best illustration prize 2012. The article warns against the
‘Return of Behaviorism’ and argued that behavior modification may have a place in
psychotherapies for phobias but not with in the educational system. It was said that
behavior modification deviates from current pedagogical as well as developmental
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Running Head: Autism and ABA
theories where there is an emphasis on mutual respect for the relationship between
educator and student/child for the importance of learning and development. Also, there
was doubt whether programs from the American context with different historical and
relationship ideologies can automatically be transferred to a Swedish context. The
Swedish National Curricula for preschool highlights the importance of democracy,
every child’s right to express their own opinion, and make choices, that preschool
should prepare all children for lifelong learning, be enjoyable, safe, and provide a rich
learning environment which is built on the child’s experiences, interests, needs and
opinion, and free of any kind discriminatory influences (Lpöf, 1998 revised 2010).
Whilst there can be little argument against the goals in the text, there are differing
epistemological traditions between the public health sector (e.g., habilitation) and local
education authorities (e.g., preschools) on how to build on a child’s experiences,
interests, opinions etc. Possibly reflecting the effects of epistemological discrepancies
at the heart of this dualistic system, Zakirova Engstrand and Roll-Pettersson (2012), in
a pilot study concerning preschool teachers attitudes to the inclusion of children with
autism in a middle size municipality, found that participants showed neutral attitudes
towards inclusive practices and only 43% reported that supports for the child with
autism were based on ABA. In addition, the average number of hours per week in
which they worked one-on-one with the child was 2.56. In sum, it appears that the
epistemological and philosophical gulf between these sectors is in need of bridging,
which at bare minimum should include recognition of applied behavior analysis in
mainstream pedagogy and special pedagogy (see Roll-Pettersson, Ala i Rosales, 2009;
Käck, Roll-Pettersson, Ala i Rosales, et al. 2014). In light of parents’ lack of a legal
mandate, there is also a need for inter-organisational contractual agreements
32
Running Head: Autism and ABA
guaranteeing children with autism the right to appropriate and individualized ABA
interventions implemented with integrity.
Despite these obstacles, Stockholm University offers an inter-departmental graduate
level course sequence in behavior analysis approved of by BACB in which half of the
sequence is given through the Department of Special Education and half through the
Department of Psychology (Roll-Pettersson, Ek & Ramnerö, 2010). To date
approximately 250 psychologists, special educators, social workers, educators and
speech language pathologist employed by either habilitation centers or municaplities
have taken these courses. A spinoff effect of the personal meetings between students
from different organisations has in a few cases resulted in new types of interorganisational collaborative partnerships and positions (Roll-Pettersson & Olsson (in
progress).
Ethics
The explicit values of ABA center around the enhancement of socially relevant and
culturally valued quality of life (Baer, Wolf & Risley, 1969). The targets for
interventions are those behaviors that constitute barriers affecting the quality of life for
individuals, families, or communities, including issues within families, relationships,
social life, education, health, employment, leisure activities and relaxation (Cooper,
Herron, & Heward, 2013).
There is nothing remarkable about the selection of these targets; they include the same
goals and aspirations most people have for themselves and for their loved ones. The
key issue is that unless the apposite behaviors occur, these goals and targets remain out
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Running Head: Autism and ABA
of reach. The focus of ABA is to help facilitate behavioral growth and skill
development to enhance the quality of life. ABA operates within a natural science
perspective and using the scientific method applied to individuals, it offers the
necessary behavioral insights and technology to achieve the goals associated with
agreed values.
Training in ABA also adheres to clearly defined ethical standards (BACB, 2014).
Issues concerned with professional ethics, though, often extend beyond the actual
practice of a science. For example, in relation to representation on review panels, a
guiding principle in most professions is exemplified by this statement from another
scientific body:
As a general rule, in matters concerning physics, the Institute of Physics in
Ireland would seek to have appropriately qualified physicists represented on
any review panel which might be reporting on 'findings from physics'.
(personal communication, Institute of Physics in Ireland, May,2012)
Similar concerns about professional competence are enshrined in ethical standards of
other professional bodies such as Social Work, Psychology, Speech and Language
Therapy, Occupational Therapy, all of which usually have an input in policy and
practice decisions in relation to autism treatment.
Unfortunately, this ethical imperative has been routinely flouted when it comes to the
science and profession of Applied Behavior Analysis (see ethical guidelines from
BACB, 2014). For example, in both Northern Ireland and in the Republic of Ireland todate, none of the huge numbers of the autism reports or strategy documents have
included any professionally qualified representative of ABA (Keenan, 2014;
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Running Head: Autism and ABA
McCormack, 2014; Behaviour Analysis in Ireland, 2013). Consequently, due to the
Dunning-Kruger effect, misinformation and the associated caricatures of ABA have
formed the basis of government strategies and policies (Dillenburger, McKerr, &
Jordan, 2014).
Category Mistake & Evidence Base
A common mistake is the confusion of ABA (the science) with methods derived from
ABA. When conducting reviews on the effectiveness of particular methods or
procedures, it is important that there is clarity on the distinction between procedures or
commercial products and the science from which they have been derived. This is a
complicated issue for those not adequately trained in the science, and the ethical
guidelines mentioned above are particularly relevant here. Figure 3 was designed to
help demonstrate the category mistake (Chiesa, 2005).
This image cannot currently be display ed.
Figure 3. A classic category mistake.
Left-hand panel: Applied Behavior Analysis (ABA) is wrongly put on the same
‘shelf’ as a range of discrete methods, such as Positive Behavior Support (PBS),
Verbal Behavior Approach (VBA), Lovaas, TEACCH, Picture Exchange
Communication System (PECS); Early Intensive Behavioral Intervention (EIBI)
35
Running Head: Autism and ABA
and Early Start Denver Model (ESDM) could also be added to replace the “?” on
the bottom shelf. This arrangement is inaccurate because ABA is the name of the
higher-level category from which these methods are derived.
Right-hand panel: As a corollary to the mistake on the left-hand panel, ‘Fruit’ is
wrongly placed on the same ‘shelf’ as apples, oranges, and pears etc. This is
inaccurate because fruit is the name of the higher-level category to which the
other items belong.
When ABA is correctly described, discussions about the evidence for ABA take on a
different dimension. Take, for example, the argument that there are no Randomised
Control Trials (RCTs) of ABA and therefore ABA cannot be recommended. The
National Institute for Clinical Excellence (NICE), in their response to the consultation
for guidelines for the management of children with autism concluded the following: ‘In
the review of evidence, the Guideline Development Group found no evidence to
support ABA, and therefore could not make a recommendation about it’ (NICE, 2013).
Unfortunately, there was not a single Board Certified Behavior Analyst on the NICE
team who could have corrected this conclusion and NICE ignored protestations to the
contrary! Certainly it makes sense to assess treatment packages that make claims as to
their effectiveness (Smith, 2013), but it is disingenuous to obfuscate the distinction
between treatment packages and the science from which these packages have been
developed.
If the same category mistake were to be made with regards to other disciplines, we
would end up with the following argument: There are no RCTs to justify the use of
36
Running Head: Autism and ABA
Speech and Language Therapy, Medicine, Occupational Therapy, or Clinical
Psychology. Clearly, RCTs are not appropriate for the assessment of whole disciplines
(Keenan & Dillenburger, 2011) and it would be a mistake to conclude that because
there are no RCTs these disciplines should not be used. Similarly, it is a mistake to
suggest that Speech and Language Therapy, Occupational Therapy, Medicine, or
Clinical Psychology are each discrete treatment. Yet, politicians are frequently
informed that ABA represents a ‘one-fits-all’ approach (Dillenburger, Röttgers,
Dounavi et al., 2014), and they therefore conclude that because each child with autism
is different ABA cannot be recommended (NICE, 2013).
Contrast this conclusion with the practice of the science as discussed with respect to
Figure 1. It really is a very serious state of affairs when professionals misinform policy
makers about a science; that’s why adherence to normal ethical standards is so
important. The misinformation on ABA has been so pervasive in N. Ireland, that a
previous Minister of Education even described ABA as a ‘commercial product’
(Ruane, 2009).
In conclusion, it is now possible to diagnose autism reliably much earlier and
prevalence is estimated to be 2% of children (CDC, 2013; DHSSPS, 2014). As these
children grow up, it is important that debates based on misinformation do not waste
valuable resources that should be used to support individuals with ASD. The
mischaracterization of a science that can effectively address the pertinent issues has
serious consequences for parents and their children. Why shouldn’t parents and
professionals be trained according to the model outlined in Figure 1? This is the
question that parents have been putting to governments in their own countries
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Running Head: Autism and ABA
(ABA4all, 2014; Unumb, 2013; Medicare for Autism Now, 2014). ABA is the basis of
evidence-based practice par excellence and the outcomes achieved by skilled
professionals explain the proliferation of requests to avail of this science by parents
worldwide. Unfortunately, straw man arguments are obscuring the true nature of ABA
and are thus preventing the light from a science of behavior reaching those who might
benefit from its findings.
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